One family's adventures in open adoption, Asperger's, and parenting one amazing little girl!

Adoption Interview

Wednesday, February 04, 2009

Sleep Study

Hannah's sleep study was an absolute nightmare (no pun intended)! I will never in my life put myself through such trauma if I can help it. That being said, we did glean some useful information from it that I'll get to in just a second. First though, here's a rundown of our night just in case you were dying to know.

We arrived at the hospital a little before 8pm (already an hour past Hannah's bedtime, but that's when they start the studies). We were the only crazy people who braved the impending snowstorm to make it to their sleep study so we were alone in the sleep lab. The tech was a bit overly cheerful for my taste and definitely was not much for inducing a calm state for sleep. Her voice was loud and just a tad too fake cheerful and she constantly waved her hands around all over the place and bounced Hannah around. Hannah did AMAZING with the procedure for getting all the electrodes on her. She sat quietly and still while the tech glued, taped, and then bandaged dozens of electrodes all over her body. She'd actually been looking forward to going to the "sleep doctor" since I'd been talking it up so much in an attempt to head off any disasters so she was ready for the adventure UNTIL they put the oxygen tubes and carbon dioxide readers into her nostrils. The moment she felt those prongs being inserted into her nose big fat crocodile tears started rolling down her cheeks and she started saying "No, No, No!" in a very pitiful voice and trying to rip them out. We had to hold her arms down while the tech taped them to her face. It broke my heart :(

By 9pm everything was on her and it was time to go to sleep. At this point we are 2 hours past her bedtime and she's running on adrenaline. She continues to keep trying to pull out the oxygen and the tech seems pretty irritated about this. We go through her bedtime routine as best we can and then as soon as it's time for lights out Hannah says she has to go potty. If the tech wasn't irritated before, she certainly was then because she had to unhook all of the wires attached to the electrodes from the machine and the tubes for the oxygen and carbon dioxide so that we could walk to the bathroom. Then she had to hook them all back up after Hannah was done. Finally I get Hannah settled into the bed and I go lay down on the fold out chair in the room. For the briefest of seconds I think that she is actually going to fall asleep, but alas that was not the case. Hannah jabbers on and on to me until at least 10pm because I am in the room. If I fail to respond in some way, shape, or form she gets hysterical thinking I"m not in the room anymore and tries to jump out of the bed which is impossible with all of those wires. SO, I have to respond in order to keep her in the bed and attached to all of those electrodes. Eventually she fell asleep for almost an hour. I watched her blood oxygen level and heart rate monitor for awhile until I saw her pulse start to drop.

Convinced she was asleep, I allowed myself to begin falling asleep only to be awakened by hysterical screams of, "Mommy! Mommy! Mommy!" She was sitting bolt upright and attempting to rip the oxygen tubes out and the bandages off of her head. I flew off of the chair, tripped in the covers, and nearly did a face plant onto the tile floor as I stumbled over to her bed in the dark (I have terrible night vision!). I called for the tech (if she'd been paying attention like she was supposed to I would have thought she would have already been on her way since Hannah was the only kid in the lab she had to monitor) to come help me, but Hannah managed to get the oxygen and CO2 tubes out and some of the bandages off. The tech came in and reinserted everything and bandaged her back up. She was quite loud and didn't try at all to have a soothing voice or manner so that Hannah might not have woken fully up. She left and we started all over again. Hannah fell asleep about a half hour later and just as I allowed myself to drift off myself the screams started again. Because Hannah had to stay in the bed and keep all her wires and tubes firmly attached, I couldn't let her cry it out. I had to respond each and every time she started to get hysterical. This happened once every hour for the entire night. Hannah cycled through a 1/2 hour of sleep and then a 1/2 hour of calming down over and over again until at around 5am the tech came in and said that we should just call it quits. I spent pretty much the entire night kneeling on the tile with my arm shoved through the bed rails to keep Hannah from ripping off the electrodes or to calm her back to sleep when she settled down. I got quite adept at reinserting the tubes into her nose and extremely skilled at protecting the bandages and electrodes from her flailing arms. At one point the tech had to come in and unhook everything because she flailed around so much that she wrapped all the wires around herself and I could not unwind her and she was panicking because she could not move!

At 5am the tech came in and took off all of the electrodes and wires and monitors and sent us home. She said that Hannah had never stopped breathing and that she talked in her sleep with her eyes open and snored really loudly. I'm pretty sure she was not qualified to tell us any of that, but it is what it is. We were told it would be a week to 10 days before we had the results of the study. We had a horrible drive back home in a crazy snow storm with 3 cranky people in the car, but we all survived somehow.

Yesterday the developmental pediatrician called and gave me the results of the study. It turns out that Hannah did indeed stop breathing throughout the night several times. The study recorded what is considered mild obstructive sleep apnea as well as abnormally low levels of REM sleep. The doctor said that this may be a sign of Hannah's body defending against more severe episodes of apnea by preventing her from getting into the deeper stages of sleep where apnea usually occurs. She also concurred that Hannah does indeed talk in her sleep with her eyes open. This is totally freaky to me. Now I'll never know when she's actually awake. All the times she did it in the lab I apparently thought she was awake. The doctor referred us to a pediatric ENT (ear nose and throat doc) who will most likely remove Hannah's tonsils and adenoids as well as put tubes in her ears (more on that in a just a second). This will be done at Riley instead of locally because Hannah is so young and so that she will have a pediatric specialist for her anesthesiologist because of the apnea. Along with the fact that Hannah's adenoids and tonsils are most likely causing her apnea, they are also preventing the fluid from draining through the Eustachian tubes in her ears. She got an ear infection in early November and they have never drained since. At Hannah's hearing test (earlier the same day as her sleep study) she failed in her left ear and they of course detected fluid in both ears. They also recommended she see an ENT to drain her ears so it can be determined if the hearing difficulties are a result of the fluid or a sign of the late onset hearing loss that can sometimes occur in kids who had neonatal herpes.

Though the thought of surgery for Hannah is very scary to me, it's comforting at least to have some idea of what the problem is and to know that it's fixable. To think that she could soon be getting a good night's rest for the first time in her short life is a happy thought. It's also nice to have some validation that there was indeed something wrong instead of having to listen to countless people assuring me that I was just an over reactive first time mom and being told that no one's kid sleeps as well as they would like and that Hannah's "troubles" are completely typical.

PS. Thanks to all who sent well wishes our way before the study and who shared your stories about sleep. I really appreciated them!

PPS. Doesn't she look all cute in her bandages and wires? Even lounging in a hospital bed she's adorable! Although the head bandage to keep the electrodes in her hair does make her resemble a burn victim just a bit!

5 comments:

She DOES look adorable! I'm so glad you took your camera. I'm glad you went ahead with the study, too. It's so hard with these kids. It's hard to know when to say "enough! enough with the testing!" We often take long breaks between Foster's tests. Since his most recent round at CHOP yielded absolutely nothing that we didn't already know (that he has mild ASD, hypotonia and a benign heart murmur) we may be done for a long stretch this time.

RE: tonsils and adenoids - I can tell you, our experience was fantastic. Foster has been stuffy since birth and has had severe sinus infections his whole life. A local ENT wanted to keep him on antibiotics and prescription-strength sudafed (sp?) year-round. I thought that sounded like a profoundly bad idea and got a second opinion. The second ENT (whom we LOVED) recommended having his tonsils & adenoids out ASAP. We did it last winter. Post-surgery, the ENT said Foster's tonsils and adenoids were the largest he had seen in a long time. I thought we would see immediate results, but we didn't. At first, I didn't think it made a difference at all. But now Foster is sleeping through the night about 80% of the time and he hasn't had a single sinus infection since the surgery. He's still a little stuffy, but I would say the surgery was a huge success for him.

I also wanted to tell you - you guys seem to be going through a lot this winter with the diagnostics. I know this is a really hard time, for both you and Hannah. But you are good parents. You're doing all of this to help Hannah have as much success as she deserves. You're doing the right thing. For some reason, I feel like you might need to hear that right now.

ugh, that does sound like a nightmare. isn't it amazing that they were able to even get results out of that? i am glad you now have confirmation that there is an issue there and that there is a plan in action to fix it.

a mom's instincts are always best. glad you didn't listen to those who said you were over reacting!